In Volume 1, Issue 2 of the Care Home Nursing Journal Kate Swaffer Chair, CEO & Co-founder, Dementia Alliance International highlights the importance of adaptive language in ensuring the quality of life and wellbeing of the residents are maintained when working in dementia care. In this blog we explore some of Kate’s key points and how we implement them here at Four Seasons Health Care when caring for people with dementia.
Mistaking a cognitive impairment for a challenging behaviour
Drawing on how we use language to express our medical, physical and emotional states Kate highlights how frustration and distress can accumulate when we are unable to freely and easily express ourselves. Kate explains the struggle health care professionals face, “Cognitive impairments should require that staff have knowledge in how to assist with LLN (language, literacy and numeracy) impairments – rather than only seeing them as ‘challenging behaviours’. Unfortunately, I have more often seen people with dementia who have cognitive impairments being seen and labelled as ‘difficult behaviours’, which are then treated with restraint of some kind, rather than impairment to the person’s ability to communicate requiring support and new ways of communicating. To improve dementia care, this needs to change.”
Language in Dementia Care
This poses the question, what can we do as health care professionals to alleviate the distress or prevent it? Kate states, “The language we use is an important component of managing distress in people with dementia. Language defines the way others see the person with dementia, allows others to communicate with them, and it also defines the way we view ourselves and allows us to communicate with others. If people with dementia continue to be labelled (and therefore viewed) as ‘challenging behaviours’, this will continue to marginalise and stigmatise them, and also means the quality of their life, and the care provided for them is less than optimal.”
As Kate highlights, the words we use can strongly influence how others treat or view people with dementia. For example, referring to people with dementia as ‘sufferers’ or ‘victims’ implies that they are helpless. This not only strips people of their dignity and self-esteem but also it reinforces inaccurate stereotypes and heightens the fear and stigma surrounding dementia.
Dementia Voices UK published the DEEP Language Guide featuring recommendations written by 20 people with dementia. The guide highlights that many people with dementia dislike the use of generic terms such as “dementia patient” to refer to all people with dementia, as this implies that they are nothing more than this. It further highlights how the media sometimes use sensationalist language choices when speaking about people with dementia.
DEEP (Dementia Engagement and Empowerment Project) also produce Dementia Diaries, a UK-wide project that brings together people’s diverse experiences of living with dementia as a series of audio diaries. It documents the day-to-day lives of people living with dementia, with the aim of prompting a richer dialogue about the varied forms of the condition as they state, “…Those of us with dementia are experts in our own conditions and have invaluable information to share."
When supporting and caring for people with dementia it is up to us as health care professionals to find ways to communicate using respectful, enabling and empowering language. Here at Four Seasons Health Care we strive to provide the best care possible by empowering our colleagues. Our Dementia Care Framework outlines a set of values and actions we follow to care for our residents and understand dementia from our resident’s perspectives. The Dementia Care Framework helps our colleagues to understand the experiences of an individual living with Dementia and how to respond to distress. The Dementia Care Framework also includes a communication tool kit which helps us to get to know our residents individual stories, build relationships and trust and ultimately enhance our care planning. We are currently rolling out the Dementia Care Framework across the whole UK.